Upside

In the spirit of "looking on the bright side", here are a few good things about having a disabled child: 

Free Parking Anywhere You Want
...well, anywhere except a taxi rank. I found this out the hard way about a week after getting the "blue badge".  I had just popped in to the butchers on the high street for two minutes and left my family in the car, and when I returned there was an ominous sticker on the windscreen. Apparently Meg had wondered why the traffic warden was taking so much interest in the car, but had not considered actually switching to the driver's seat and moving it.  After paying the fine I think it took me about six months of not having to pay for pay-and-displays before I was back in credit.

Anyway, apart from that, being able to use the disabled spaces is brilliant. Being allowed to park on double-yellow lines is quite surreal; it seems a bit too good to be true.  If there are double yellow lines on the road that means it is not a good idea to park there, doesn't it?  So why make exceptions?  Every time I do park on double-yellows, whenever I return to the car I expect to find a little sticker on it telling me I have misunderstood the rules, and that another six months of parking charges savings has disappeared.  So far so good though. 

Immunity
It seems to me that no matter how badly Jamie behaves, no other adult will ever tell him (or indeed us, his parents) off.  I imagine that if, when I was thirteen, I had climbed into the passenger seat of a stranger's car and angrily shouted my demand that he take me to Newcastle, I would have received a stern rebuke, and possibly a cuff around the ear.  When Jamie did the same thing last summer though, it was met with an amused chuckle; the driver had a good laugh with me when I arrived, out of breath and a with a look of desperation in my eyes, a few seconds later.

I have been in situations where Jamie's victim has taken a few seconds to realize that he has Down's Syndrome, and in those few seconds I have had a glimpse of what it must be like to be the parent of an ordinary delinquent child.  Once, at a car-boot sale, a middle-aged woman started telling Jamie off because of some misdemeanor he had committed, when the younger woman she was with whispered something in her ear, and the telling-off stopped immediately. The older woman then apologized to me and shuffled off.  Just the other day in a soft-play area, a parent came to me me to complain, not unreasonably, that Jamie had been spitting at her child at the top of the spiral slide; she only got as far as explaining the facts when two of her friends dragged her away telling her to leave me alone.

You see?  It is immunity.  It is just as well really, or else we would all be in prison by now.         

Cashing in
We have made a few quid over the years from TV shows that buy funny home movie clips.  For example I got £250 for the footage the time I sat in a ball pool with Jamie and asked him for a kiss, but instead he attempted to gouge my eyes out while giggling manically.

It's just a shame that we have also missed so many potential £250 incidents.  I only wish I could film Jamie every second of every day, I would make a fortune.

Theme Parks
The fact that amusement parks like Alton Towers and Disneyland let us go on the rides without queuing is one of the best things ever.  The only downside is that we are only allowed to queue-jump if Jamie is actually going on the ride with us.  This means that when we went to Disneyland a few years ago, I did not get to go on Space Mountain at all, but I did get to go on "Small World" three times.  


No Sports
Jamie's special needs school does not seem to go in for competitive sports.  In fact they appear to be ideologically opposed to them - in a meeting once, Meg suggested that they have a sports day at the school, and everyone looked at her as though she had suggested ethnic cleansing.  Anyway, at least this means we don't have to go and pretend to enjoy watching him play football once a week in the wind and rain, like my parents did with me.


Cuddles
This is the best one.  How many dads still get long enthusiastic cuddles from their teenage children?  I do.

A bad day for Cascades Swimming Pool.

What's the worst thing that has ever happened to you at a swimming pool?

A friend told me that the worst thing she ever saw was when a little boy told his mother that he needed to go to the loo, and the mother had said "Just do it in the pool," so the little boy stood on the side, pulled his trunks down, and peed into the pool. Well, that's not too bad is it?  Quite funny actually.  My sister told me that she, while pregnant, once threw up in the shallow end of her local swimming pool.  That is pretty bad actually.  But I think that what happened to me in Cascades pool in July 2013 was worse.

I have been taking Jamie swimming regularly for several years - I have a pretty good routine for getting changed that effectively minimizes the likelihood that he will damage something, or escape and cause himself or someone else to drown.

These are the steps to the routine:

1. Get changed together in the group changing room
2. Lock the group changing room with the key.
3. Hold Jamie's hand while I put the key and all our clothes and valuables in the locker,
4. Lead Jamie to the toilet.
5. Go in the cubicle with him while he uses the loo.
6. Quick shower for both of us.
7. Go swimming.

On the ill-fated swimming trip in July, steps 1 and 2 went according to plan, but at step 3 there was an unexpected problem.  I put all our belongings in the locker, and put the pound coin in the slot, then turned the key to lock it, and nothing happened.  The locker had taken my money and refused to lock.  So there I was, wearing swimming trunks, trying to restrain an increasingly impatient twelve year old with one hand and trying to fix a broken lock with the other hand.  When I realised I could not fix it (due to a complete lack of any skills relevent to locker-fixing), I had a dilemma - if I went looking for a member of staff to help me I would have to leave my valuable unattended, but unpacking the locker and taking everything with me while holding on to Jamie with one hand seemed like asking for trouble.  As I stood there, paralyzed with indecision, Jamie pulled free of my grip and ran off towards the toilets; I saw him go inside a cubicle and lock the door.  Thinking that he would probably be fine for a few moments, but conscious of the fact that step 5 (above) states that Jamie should be supervised in the toilet cubicle, I ran off to find help and soon returned with capable-looking member of staff who had a screwdriver.  While he set about fixing the locker, I tried to coax Jamie out of the toilet cubicle.

I had thought that the worst-case scenario was that Jamie would either refuse to come out of the cubicle, or that perhaps while he was in there he would flush all the toilet paper down the loo; but no, he managed to surprise me with something much worse.  When he eventually came out of the cubicle, he was holding his hands in front of him, fingers spread out, and they appeared to be covered in melted chocolate.  I was confused.  Where could he have got chocolate from?  Then, the full horror dawned on me.  It was not chocolate.

Quickly, I grabbed Jamie by both arms, and let him towards the sink at the back of the room.   I turned to the helpful staff member, who was staring at us with his mouth open, and muttered "Sorry mate, I think you're going to have to clean the inside of the cubicle."  When I reached the sink and started washing Jamie, he did not resist, thank goodness; if he had decided to struggle against me...well, I cannot bear to think about it.

While all this was going on, another member of staff came in from the pool side, looking for me and Jamie.  My wife, who had by now got changed in the ladies' changing room and was in the pool, had been wondering where I was, so had sent a lifeguard in to the men's changing room to check her husband and son were okay.  I indicated to him that we were okay.  I imagined him going back to her and saying "Is your son small, with Downs Syndrome, ginger hair, and covered in poo?  If so, he is fine."

Eventually, after a thorough scrub, and another apology to another appalled-but-trying-not-to-show-it member of staff who had to clean up the sink area,  we progressed to step 6 (although I thought it prudent to have a longer shower than originally scheduled), and eventually step 7.  Swimming.  At last.

As I made my way out towards the pool I avoided making eye contact with the poor guys who were cleaning up Jamie's mess.  Half of me was feeling sorry for them, the other half was thinking "This is nothing, you guys only have to deal with this today, this is my life!"  The other half (well, you know what I mean) was thinking that if their lockers had been working properly, none of this shit whould have happened in the first place.

Adventures in Cranial Osteopathy

When Jamie was a baby, his head was a little misshapen. It seemed to be a little flat at the back.  We mentioned this to our doctor, and he told us that this was very common, and it was because Jamie was sleeping on his back, and his soft skull was moulding to fit the mattress.  This sounds worrying, but he assured us it was very common and Jamie would soon grow out of it. 

A friend however, told us that she had experienced something similar with her child, and that a cranial osteopath had helped, although it was quite expensive treatment.  I had never heard of cranial osteopathy, and had no opinion as to whether it was proper science or charlatan quackery, but by that point I was in the zone where I would pay anyhing for the slightest possibility that somebody could help Jamie with anything.  So we made an appointment.

The osteopath was a very nice young lady.  She seemed very professional, apart from the fact that she operated from a "clinic" in her parents' house.  It was a nice house however, and she had certificates on the wall, so that made up for it, I guess.

Over the course of several weeks, Jamie had his skull gently manipulated by this young lady.  Very gently in fact.  Sometimes she just appeared to be holding his head, and I wondered if she was doing anything at all. 

A couple of months and a dozen or so expensive sessions later, the osteopath told us that Jamie was a lot better now.  Looking at him, I was not so sure; his head still seemed rather flat at the back.  However, the osteopath had proof - she produced two photographs.  Putting down the first one on the table in front of us, she said "This is a picture I took of Jamie just before the first session."  We looked at the photo, and the misshaped head was clear to see.  Then she put down the second photo, and said "I took this photo last week, and you can see a clear improvement."  We both peered at the photo, looking for improvement, but not really seeing it.  There was an awkward silence.  All three of us stared at the pictures.  After a while, a furrow appeared on the osteopath's brow.  Then she blushed a little.  Eventually, she said "Hang on.  I've got those the wrong way round..."

How to Brush Jamie's Teeth

Here is a beginner's guide on how to brush the teeth of a child with special needs, in ten easy steps.

1. Approach the subject, keeping the toothbrush away from the swinging hands and avoiding the kicks.
2. Take his dummy out of his mouth and put it to one side.
3. Remove anything from his hands that could be used a s a weapon.
4. Try to persuade the subject to co-operate, then quickly accept that that is not going to happen.
5. When the subject shouts "HELP ME!" try to slide to toothbrush into his mouth.
6. Grip the toothbrush in your own teeth while you use both hands to restrain the subject to prevent him from grabbing the toothbrush.
7. Realize that if you are using both hands to restrain the subject, you do not have enough hands to actually do the teeth-brushing.
8. Consider, for a moment, trying to brush his teeth while gripping the toothbrush in your own teeth, before quickly realizing that that is a ridiculous idea.
9. Consider sitting on/tying up/sedating the subject, but keep saying to yourself "imagine social services are watching" over and over until you come to your senses.
10. Get his mother to do it instead.

The Ten Best Picture Books for Kids, for Adults.

I have been reading bedtime stories now for thirteen years, every night, sometimes three or four times a night.  Yes, I have read a lot of picture books and I consider myself something of an authority in the genre. There was a time, many years ago, when I aspired to be an authority on Shakespeare or Dickens, but now I think I have to accept the fact that my expertise is in Dr Seuss and Julia Donaldson.

Anyway, I don't mind telling you, most picture books are awful.  Lots of them are just plain boring, some of them infuriate me by having rhymes that don't actually rhyme properly.

Not the books on this list though.  These books are all great fun.  I have selected ten books, in no particular order, from the authors that I like reading out loud.  They are the ten children's books that I think parents would most enjoy.


A Squash and a Squeeze - by Julia Donaldson

Most of Julia Donaldson's books are fun to read, and by far her biggest success was "The Gruffalo", but my favourite of hers is "A Squash and a Squeeze".  The story moves along at a great pace, and the rhythm and the rhymes are surprising and fun.

The Toy Story Chainsaw Massacre

Jamie loves Toy Story.  He loves all the characters too, although you might be forgiven for thinking he hates them all and wants to kill them in painful ways.

Poor Buzz